Outrage #1: Wasting time of skilled caregivers. Everyday skilled nurses and physicians’ assistants waste hours of time on the telephone either getting approval for medications that we prescribe for our patients or trying to fight a rejection for a medication we requested.
Outrage #2: Choosing a medication for cost, not effectiveness. A child cannot breathe because the acid and other nasty stomach contents come up from the stomach and inflame the airways without the right treatment. Although many of them might respond to one “preferred” drug, not all of them do. And, guess what? There is another “non-preferred” drug to which more of them will respond, but it is not allowed as a first line treatment, even in this critical airway situation. When there is an airway problem and the infant is choking, coughing, turning blue and not sleeping, or the airway is becoming progressively narrower, wouldn’t you want your child to have the medication that works more often? I know I would. The insurance companies call their approach “best practices” because most, but not more, might respond.
Outrage #3: Pretending we are giving care when we are not. So the one “preferred” (i.e. less expensive) medication also tastes really nasty. Many kids won’t take it at all no matter what flavor is used. So then families are told to mix it with their formula or juice or some other food and this dilutes its effects because it won’t work in that preparation.
Outrage #4: Pretending that patient diversity doesn’t exist. Different people respond to medication differently (? pharmaco-genetics). You know that’s true just from the way some of us fall asleep after one dose of Benadryl and others of us don’t get knocked out even with a whopping dose of morphine. We are in a real quandary when we have to fight (sometimes for weeks or months) to try another medication because the one we are allowed (first tier) doesn’t work. And then on the second or third tier, the family cannot afford it, doesn’t get the medication, and the child might go untreated. We have wasted money, time and have put the child in harm’s way.
Friends, I am not making this up. And the problem is going to get worse. Why? Because there are some with influence who really believe (incorrectly) that there are “experts” who know the right thing to do for an individual patient, whom they have never met. Well, they don’t. Each patient has a unique set of variables that requires a lot of thought before prescribing occurs. I have just named a few.
This misguided approach to patient care is much more eloquently discussed by Pamela Hartzband, MD and Jerome Groopman, MD in an editorial in the Wall Street Journal. I was so pleased to see that these two brilliant Harvard minds (wife and husband) have continued to chip away at the myth that there are such things as “best practices” or that “expert opinion” will result in the best care for all.
In my almost 10 year tenure as director of the Center for Pediatric Quality at the Children’s Hospital, I firmly resisted even using the term “best practices,” because I truly believed that there were only “better practices.” What we think is best today would and should be replaced by what is better tomorrow. That is what makes medicine challenging and what creates the forward movement of innovation. We have benefited from the explosion of treatment options for people who didn’t get treated 30 years ago because they were developmentally disabled or too old to undergo an operation or for whom the technology did not exist.
Yes, I am angry about this. Very angry and very frustrated. I am tired of being told what medications to use, what tests I can order and even what surgeries to perform. I am “appealing” to one insurance company to be paid for an operation they said was not proven effective in children. Were they faced with the anatomy that I encountered and knew was the cause of the problem and required a different operation than planned? Another has denied payment for an assistant surgeon which I needed because we performed a difficult airway case!
Should I have risked the child’s airway without another pair of skilled eyes and hands? And recently another applied criteria for tonsillectomy (which were outdated and wrong) and said the kid didn’t need it because my charting was inadequate. In every instance I know my judgment was correct, but their “expert panel” who might reads an article but has not been with this patient, comes up with a sweeping policy and applies it to all of the patients. It’s a joke that’s not funny.
So who needs doctors? Increasingly insurance companies and the government tell us what is best for our patients? That is what is happening. It is making me really angry. What about you?
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